Flirting with the Dark--

Because it's not Halloween, I thought I'd do a post that's Halloween related just for giggles.

Are You Flirting with the Dark; Or, Are You A Closet Rebel?

Vampires.

We all know what they are on the surface.

But come a little closer and let’s delve a little deeper.  Step behind the dark veil and embrace the thoughts in the back of your mind.  You know, the ones which some people rarely indulge.

Vampires are a safe plaything, if you will.  They allow just about anyone to take a walk on the dark side or flirt with it, even if only for an hour or two via a book, tv series, or movie.

What do vampires represent?  Coming out into the darkness.  Pure, hot lust.  Need.

Who doesn't have needs?  

When I look at a vampires, I don't see something creepy-scary- must-go-stabbity-with-a-big-sharp-piece-of-wood creature in a Buffy kind of way.  I see pure, primal need and I think on some level, that sort of thing appeals to people, otherwise the stories, the books, the tv shows and movies wouldn't continue.  (Supernatural, True Blood, Underworld, Steve Barton’s Graf Von Krolock from Dance of the Vampires, anyone?)

In a way, it is darkness versus light.  Most people want to believe they are safe in the light, be it figurative or literal.  They want to believe they can watch such things as vampires in a movie or read about them in a story and then when it's over, it's over.  They can put it away or walk away from it and that makes them safe, back in the light, so to speak.  But I think that level of participation by either reading or watching lets them connect with the things a vampire represents—the darkness, the lust, the need.  (And it doesn’t even have to be October 31st for that to happen.)

It's something they can't or won't further acknowledge within themselves, so they loosely connect through the media which they’ve chosen and then they can safely walk away from it, having had a very safe flirt with the dark.


And then I think for some, that lingers, making them a closet rebel because deep inside, even just a little, they sometimes wish to either be that vampire or be the one to sate that need.

Zomato, zomato and multiple linkage.

Apparently, the Urban Spoon site is no longer the Urban Spoon site and is now Zomato. We'll see how this goes with the food review thing I have going on there.  JS

My friend, Beth over at The Cult of Perfect Motherhood, posted something which I believe you, the readers, should take a look at.  It's about why she hates the pink ribbon culture and it's a damn good read.

Living With Cancer:  Collateral Damage by Susan Gubar is also an excellent read.  She talks about even though treatment may end, side effects don't always end and many are impairing.  Personally, I can cite the fucking lymphedema that flares up on occasion and makes things difficult for me and yet for many others, it's absolute fucking torture they have to live with day in and day out because it's not curable and it's not controllable for them.

I don't know how on earth I've missed Shittytittiebangbang, but I did.  Now that I've found her, I wanted to share with you all.

A molecular biologist explains how THC completely kills cancer, so maybe we'll eventually see what comes of that, like maybe more studies and it can finally be offered as a valid option in the treatment of cancer and other vile illnesses that wreck people's lives, bodies, and health.

And in other important linkage I'm sharing today, The Realm of Caring is rocking the news and education related to cannabis in the healthcare industry.

Coping with Fear of Recurrence is actually somewhat helpful in content.  I admit I was surprised when I read it because it came across as helpful in a good way.

Breaking Breast Cancer has a great post about recon related ink.

Cancer--Until You've Had It, You Don't Get It.  That pretty much says it all, I think.

What is the Real Battle Here? is another one that's an excellent read.

Breast Cancer Awareness?  Let's Get Real from The Accidental Amazon is, of course, a great read.

From JAMA Oncology (Journal of the American Medical Association) is Losing the Battle With Cancer and I think it looks like they're finally starting to comprehend just exactly what a shit storm a cancer diagnosis actually is for so many patients.

I may not post much for the month of October because there's just so much that needs to be said and I'd never be able to say it all.  JS  

The beginning of September.

Last week, I got my teeth cleaned at the dentist. The hygienist who does that is so patient with me. I have a super hyper gag reflex now because of all the throwing up I did during the year of chemo. She commented on my lymphedema sleeve, so I told her all about that. She's so nice, her mom has had breast cancer, so she actually understands me being such a flake about stuff now, but I was able to get my teeth cleaned without going into panic mode because she kept nose booping me. The dentist is a cute little redhead who has a son a few years behind the youngest monkey in school and in the same district, so we always talk football, so all of that actually went well. They love it when I come in because they want to know what I'm cooking. (Wait until I mention I cooked a smoked turkey breast in the slow cooker--I bet they haven't thought of that one yet.) The other dentist is an older guy who always speaks to me, even though I'm not technically his patient.

Anyway, yesterday, I went to the oncologist by myself. (This is a bfd for me after the cancer related ptsd thing.) I got up and baked and took at least three dozen cookies for the onc. (Basically, I went by myself because the husband lost five weeks of paid vacation when he was laid off from the other job, so now he doesn't have time he can take off for this sort of thing.)

When the oncologist came into the exam room where I was, he sat down and asked me what was going on, so I told I was in for a visit so he could see I was still as mean as ever. He said if I wasn't still mean as ever, he'd be concerned about me.

I told him I was still taking the turmeric, but wanted to know if my knees were always going to scream at me if I tried going up or down stairs or was I stuck with that. He told me I'm stuck with that.

Then I told him about the porcine thyroid supplement I'd been taking and handed over the bottle. I told him I figured he either wouldn't object or he wouldn't like me taking it. He said if it worked for me, he doesn't have a problem with it. (This stuff isn't FDA approved, but he's okay with me taking it in spite of that because it makes my energy levels improve, go figure.)

I showed him my lympedema sleeve from Solidea Medical and told him it was so much more comfortable than the other products out there. I told him I need the occasional manual drainage done on my arm but the way the laws are written in this state and with the insurance, I can't have that done because the state and insurance dictate that I be put on an anctual physical therapy regimen to go with the drainage, even though I don't need physical therapy, which is frustrating because I only need the manual drainage when my arm flares up and that could be once every six weeks or once every six months, I never know. He told me that he couldn't do anything about the hoops the state and insurance want me to jump through, although if I could find a massage place that does "light" lymph drainage work, I could try that, but the insurance wouldn't cover it.

At that point, I mentioned that the kinesio taping did quite well for pain control and that my neighbor will tape my arm on occasion and that I can easily lose an inch from my upper arm within about twelve hours if she tapes me and that taping usually lasts three to four days. He said he'd seen that but he didn't know anything about it and since I was telling him about it, he was going to look it up and research it further. Then he told me I should start a breast cancer consulting business or something along those lines since I know so much. I told him I wasn't really qualified to do something like that and that's when he said that no matter how much the medical profession knows, they don't know what it's like to be the patient and that I do know a lot.

That's when I told him I had a group called Cancer Bitches and it was pretty much a worldwide group and he thought that was interesting.

I explained to him about the still throwing up on occasion thing that I still blame on chemo. I was finally able to articulate to him exactly what happens and said if he wanted me to go see a gastroenterologist, I would. I told him that sometimes when I start eating, I feel the top of my stomach knot up and that it's like my esophagus and stomach are on two different movements or are being uncoordinated together at the same time separately. When that happens, I take a fourth of a phenergan and if that helps, great, I keep eating. If it doesn't, I try another fourth of one to make a total of a half of one and then I can literally feel both the esophagus and my stomach relax and feel normal again. He asked me if I ever take a whole one and I started laughing and said "Sir, if I took a whole one, I'd be comatose for about six hours." He asked me if that worked for me, taking the phenergan that way and I said pretty much, so he told me that if that works for me, he has no objection to it and would I like to have more phenergan. I handed the bottle over and asked if that was okay, I wasn't dealing phenergan. He looked at the label and said he didn't think I was doing anything like that at all since the label on the bottle was over two years old, then he monkeyed around with the computer and sent in a refill to the pharmacy electronically.

We moved on to the topic of a PET scan, if that would be beneficial or not at this point since I'm coming up on four years from surgery in January. He said at one point, the risks of scans are not any longer outweighed by the benefits, so if I want a scan, he would order one for me once the health savings account total rolled over to an amount that would cover payment for the scan, or if I didn't want one, that was fine too, he was leaving that up to me. If, at any point, I feel like there's some sort of problem, he would, of course, order a scan. (Not unreasonable, I think.)

While he's wanted to see me once every three months and get me scanned once every six months, I've really stretched the time out because of the stress of anything medical related causes me. After poking and prodding on me here and there, he said he could confidently say I'm still NED and that I could come in once every six months now, but if I was going to keep bringing cookies to him, then maybe he should stick with the once every three month schedule to keep getting cookies more often.

We talked about a few more things, nothing major, but I pointed out that I'd come in by myself. He said please give his regards to my husband and I said I would. I told him I'd even managed to sleep a little bit. He said he understood this was a terrifying thing and it always would be and that people on his side of things just don't understand it like someone like me or other patients would. (Holy fuck, I'm going to try to find the best white chocolate chip macadamia nut cookie recipe for this man because I think he actually gets it and really deserves it.)

I thanked him and left, feeling like I could breathe again, and not have that borderline tunnel vision, can't breathe thing going on. (I only dropped the F bomb once, ladies.)
Ran home, let the dog out, crated him again since he's a bratlet and not trustworthy to be left loose in the house while people are gone, and then went to the eye doctor. I've seen him several times because Football Monkey needed an eye exam and glasses, but I liked him and since I was somewhat familiar with him, I was okay with getting my eyes examined by him. He's great because he explains everything very well and is a personable guy with a pic of his grandkids on the wall. They call him Opa, which he mentioned is German for grandfather. I guess I'll wind up going next week to pick out bifocals. (He said I could try a higher number on the over the counter reader glasses I've been wearing, or I could get a prescription for reader glasses from him, or I could go ahead and get a prescription for bifocals since I'm slightly astigmatic, it was up to me and he'd go along with whatever I wanted to do.)

Went by to speak with the horse person about an exchange of work for the occasional riding lesson and am waiting to hear back from her about that.

To scar pic or not to scar pic? That is the question.

And here is my answer and why.

I didn't have the opportunity to find out about what other cancer patients looked like after surgery. The entire time I was doing chemo for the first six months, the word lumpectomy was spoken, reinforced, emphasized, so much so, that while the remote possibility of a mastectomy had crossed my mind, the health care people were saying lumpectomy the whole time, so of course, *I* didn't know why the hell a mastectomy had even crossed my mind once or twice. They knew what they were doing, they knew what they were talking about. They dealt with this shit every day. After all, I was *just* the patient who didn't know anything. 

Imagine my shock when I went in after the first half of chemo and was told "Time to schedule your mastectomy." like it was no big deal. I wasn't given an option, there was no actual discussion of it. Just this is what is going to happen next. Within a week, I was in to see a surgeon and things went from mastectomy to my saying (with the nurse telling me afterward the insurance would, indeed, cover a bilateral) that I would not do this again and stay sane, take them both.

As sick as I had been, as sick as I was, I just didn't have time to mentally process going from lumpectomy to mastectomy, to bilateral mastectomy. Imagine my disgust when I was told upon waking up that "nothing had been found, although four of twelve (or sixteen, honestly cannot recall at this point) nodes had been positive." Why, then, had a bilateral mastectomy been done on me, and not a lumpectomy? Why was it both ways? Some lymph nodes were positive and yet there was "nothing" in my breast? What the fuck?  Nobody would (or could) explain this.

As soon as I finished out the second six months of chemo, I relocated because of my husband accepting employment in another state. As I slowly started to recover from the ravages of what had been done to me, physically, mentally, emotionally, I began to find other women like me. Some who had had reconstruction, some who had not. Others were in the process of deciding.

In any case, I decided to start putting up pictures of my scars, generally for the month of October, that was my profile picture. I wanted people to see the reality of breast cancer, a reality that I really didn't get to find out until after it had happened to me. I still fully believe that had I seen more images of other women who looked similar to what I did BEFORE my amputations, I'd have been far more accepting of my body and what it might or would look like.  I think, I believe, I KNOW I would have processed it far better on several levels. 

Instead, I was left on my own to cope and this is such a shit storm to cope with, there's just no other way to put it. It's not like we get owner's manuals for our bodies afterward. Before diagnosis, there is "normal" and afterward, there is no across the board normal, because everything is so varied, age of diagnosis, reason--genetics, hormones, etc./lack of reason, kind diagnosed with, treatments, etc., that I don't believe anyone really, until recently, wanted to try to figure out what to do afterward to help; after all, I'm still of an age where, back in the day, this was an "old woman's disease" and it wasn't talked about.  It wasn't ever a topic of discussion for me until I was in my late 30's and an online acquaintance in another state was diagnosed.  I think this is where social media begins to come into this as a factor.  Now we're able to find and help each other.

Then there's the dumb asses who don't want to see the reality of breast cancer. There's the people who give public lip service, like one person I had to block. She would "cheer me on" publicly when I would be so "brave, putting up scar pictures" and yet she would castigate me in private messages, telling me that nobody but my husband and sons should see my scars, that it should be kept private. 

I politely thanked her for her messages and decided to tell her that I was going to keep saying and doing what I was for others to know they weren't alone. She told me I was evil when I politely told her that since she couldn't be nice, I was unfriending her. Her telling me I was evil was what put me from the unfriending mode into the block mode and I blocked her ass. Who the fuck needs that? I certainly don't. Not when I was getting tons of messages from people, other women, THANKING me for what I was doing because it was the right thing. One person saying I am a horrible person doing that, as opposed to probably close to hundreds (now) telling me that I'm doing what needs to be done? Yeah, I still believe that giving that one person the block was definitely the right thing to do. 

So, bottom line is, if by sharing my ugly ass scar pics will keep just one woman, or even a man, since men can get breast cancer as well, from having such a hard time processing what their body may potentially look like, well, then fuck yeah, I'm going to keep sharing and whoever doesn't like it can go fuck themselves. Because you know, I'm a bitch that way now and if that makes me a bitch with an attitude, then yes, I've got bitchitude and I dgaf.  JS

Since most of my readers are in the U.S.--

I decided not to adapt Britglish to my repertoire of spelling.  

*waves to Alaskan readers*  Yes, I see you people lurking up there with my bright green graph of readers illustration.  I'd have thought you were all out hunting and fishing, but maybe you reserve more reading time for when it's cold out, yes?

Anyway, regardless of what you Alaskan readers are doing, it's nice to have you reading.

Here's some fabulous linkage to share with you today.

Please Put That Can of Soup Down and Put Your Bra Back On is very well stated by Leisha, over at Cancer In My Thirties.  Yes, it's an older post, although it's put together in a way that is applicable at any time of the year.

I am Not Your Hero is from The Geeky Nimrod.  I read this and while it's true that I fucking hate being called any of the things he mentioned, like hero, strong, brave, etc., it annoys me because all I did was survive chemo.  Well, my body sort of survived, it broke my fucking brain and quality of life.  To my way of thinking, for anyone diagnosed with cancer to be called a hero, blah blah blah, they also have the very real possibility of mets, so if someone winds up with mets, does that make them any less than a "hero," in that case?  I don't think it does and it's insulting to them because it implies they didn't do all the "right" stuff to stay a "hero" for the cancer to have stayed gone.  

That said, if someone wants to stand up and say they survived cancer and that it makes them a hero, well, good for them, but you know what?  I have yet to find anyone who has had cancer or who is currently currently dealing with it who does that.  "Look at me, I'm so wonderful, I had/have cancer and I'm win automatic hero status because of it."  Nope, that's not happening with anyone I've seen/heard/run into.  It's the non-cancer people who do it to us, go fucking figure.

Cancer Curmudgeon shared this and I wanted to toss it up here for you people to watch.  Inspiration porn and the objectification of disability:  Stella Young at TEDxSydney 2014. This was awesome to watch and if you change out the word disability with the word cancer patient, well, boom, there you go.  It's definitely applicable to the whole hero/shero/rock star/inspiration/etc. blah blah blah factor that so many of us find ourselves contending with on a regular basis.

Just wanted to toss those out for you.

What have I been into?

Two exceptionally good hair days and a fabulous day with makeup in the past week, which is very rare for me.  (Thank you, Physician's Formula in buff beige.  This has fixed the steroid blush which has been fucking lingering for three years after chemo so bad that I haven't been able to correct it at all up to this point, so yay for that.) 

Lots of football time.  Lots and lots of it.  

Would like more horse time, but it's been so damn hot, it's unreal.  We had a cloud cover and some rain today, though, so that's okay.  We needed some rain.

Way overdid on the cleaning binge yesterday.  I rearranged the laundry room except the washer and dryer, tidied up the coat closet, (which is small, so I turned that into a linen closet with a cloth shoe closet organizer), managed to wrangle the laundry, clean the bathrooms, and do some other assorted stuff around here. 

There's an outstanding post over here at Cancer Curmudgeon's blog.  She's always incredibly articulate and solidly nails exceptional commentary about the stuff those of us who have been diagnosed have to contend with.  Her fearless sharing makes me feel incredibly pleased to say how awesome she is. 

Today was...interesting.  I wind up doing stuff where I'm around other people.  Consistently, I find that kids of any age have far less of an issue with how I look than adults.  Actually, I'd have to say across the board, kids have zero issue with it.  Adults, well yeah, let's just say that they seem to have problems with it and those who do fail epically at hiding it.  Their fucking problem, though, not mine.  (Although this is why horses are so awesome.  They don't care what I do or don't look like.)

Jeggings people, they're a bad idea.  This so needs to end already.  I don't care what size someone is or isn't, these jegging things should be put on a rocket and launched out past Pluto and forgotten about.

I'm going to take my bitchtastic self in there and make toothpaste now because my toothpaste is so wonderful.

So, this week is...this week, with links.

Friday of last week, barn time.  I gave the pony a manly war braid thing to get his mane pulled up off his neck because it's so long and thick.

Saturday, found out there's a lady who boards her horses at the small horse farm around the corner.  She does Very Reasonably Priced Lessons, as in VERY reasonably priced.  Score!

Sunday, laundry.

Monday, picked up trash along the fence line at the small horse farm around the corner and spoke with the lady who does reasonably priced lessons and handed out carrot bites.  Score!  

Tuesday, went to small show barn and had some social time with some of the show horses.  With the heat being as bad as it is, grooming is more of a challenge than when it's cooler, so I only managed to get one horse groomed well before I needed to leave to run some errands and pick up Football Monkey.  Still a score.

Today, well, what can I say about today?  It was strange.  Some of the people I know online have had metsters they knew who died earlier this week.  It fucking sucks.  I fucking hate it for them.  This disease fucking wrecks lives.  I also had to ponder an NCBI release of information regarding HER2+ and HER2- cancers.  Evidently, there isn't long term tracking done, so the statistics are fucked regarding how those like me are actually doing long term.  I also found out that regarding mets, what is of most concern for me is the potential of mets to my liver and brain for twelve fucking years.  Twelve.  And yes, that's going according to the statistics presented.  (Where people pull the "magic" five years out of their asses as a "safety" zone regarding HER2 cancers, I have no fucking clue, but it pisses me off.  I want to print this shit out and put it under my onc's nose and tell him I'm not stupid and that I don't appreciate not being told about this stuff.  To be fair, he's not the one who was such a dill hole to me when I did chemo, but at the same time, I'll never really trust him because he's a doctor and he probably is under the grossly mistaken impression/opinion that I was already "informed" about this stuff when I was in chemo, which I was not.)

This is a lovely post about the Mythical Cancer Warrior.  The phrase, "Mythical Cancer Warrior" reminds me of the typical over done trope (perspective) about cancer  by the non-cancer civilians.  I greatly appreciated reading this post and wanted to share it here, since my readership seems to have picked up.

I Can Pretend by the Cancer Curmudgeon and the reality of this shit.  She so articulately states what so many of us are thinking/encountering at any give time when dealing with the shit storm that cancer is.

And here's how a Molecular Biologist explains how THC kills cancer.  Gosh, you'd think using something like that to cure cancer without fucking up people's lives and wrecking their health would be, oh, I don't know, criminal, or something.  JS

In spite of the heat, today definitely falls into the category of amazing barn time.  While I managed to groom only one horse, I had the amazing experience of being on the receiving end of not one, but two hugs from two different horses.  If any of you readers are familiar with the body language of horses, you'll know that their noses are super personal space for them.  They explore with their noses.  I eat peppermints like a fiend anytime I'm around horses and once they are interested in me, I'll exhale slowly from my mouth and let them smell the peppermint.  (Yes, horses like peppermints.  I have yet to have this fail me.)

My action is rewarded with perky happy forward ears and great interest in whatever it is I'm going to do--comb, brush, and/or braid.  I visited with one horse who I wasn't going to groom today and was standing outside his stall.  He had poked his head out of the stall to say hi to me, so I started scratching his neck.  He straightened it and leaned, so I kept scratching and moved to the other side.  He leaned on me, so I reached up around both sides of his neck as high as I could get and managed to find his happy spot on his poll, up on his neck on behind his ears.  If he was a cat, he would have gone into hyper purring mode.  He rested his head on my shoulder, the full weight of it and even pulled me a bit closer.  This is like a horse hug, for lack of a better way to put it.  I felt so privileged to have gotten that sort of acknowledgement from him.  (And for continuity's sake; Score!)

I moved along to the leggy bay mare and brushed her, worked on tidying up her wild mane, and didn't even mess with her tail.  I need to work on stepping up my game on the mane and tail detangler.  The winter/spring formula is NOT going to work during the summer.  I'm thinking aloe pureed with distilled water, white vinegar, and a couple of other things should potentially work.

There was one horse I hadn't worked on last week or earlier this week, so I tackled sorting out his mane and getting him groomed.  He leaned into the brush when I was brushing his neck, so I started scratching his neck in the same place, up on the poll.  That elicited a very soft, relaxed snort and he closed his eyes.  He sighed and leaned some more, so I went in for the ne plus ultra.  Both arms around the neck, scratching his poll, and I managed to be rewarded in the same manner.  The full head weight relaxed on my shoulder and that slight pull with the head to move me a little closer to him.  Score!  

I exited the stall and closed the door.  Then I asked him if he remembered "pretty neck" and he responded with arching his neck to show me that he did.  I told him he was a good, smart boy and was so pleasantly surprised because I hadn't asked him for "pretty neck" for several months.  He accidentally learned it back in the winter in maybe five minutes with no treats involved other than verbal praise and me petting his forehead as a reward for his effort.

Horses are amazing animals.  They are intelligent and it's so easy to understand why they are exceptional for therapy.  

Avoiding the scary chickens today?  Why yes, yes I did avoid the scary chickens.  Score!